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The mission of the Dystonia Medical Research Foundation is to advance research for more treatments and ultimately a cure; to promote awareness and education; and to support the needs and well being of affected individuals and families.
The overall membership of the Dystonia Foundation is comprised of individuals living with all forms dystonia, their friends and families, healthcare professionals and researchers-multi-faceted and broad in its perspective, uniting people on all levels to better serve those living with dystonia.
The Dystonia Foundation was founded in 1976 by Samuel and Frances Belzberg, of Vancouver, Canada, after their daughter was diagnosed with dystonia. Dedicated to serving the needs of all persons affected with dystonia and their families, the Dystonia Foundation has grown from a small family-based foundation to a membership-driven organization of close to 32,000 persons.
The Dystonia Foundation is governed by a volunteer Board of Directors led by Rosalie Lewis, President. The Scientific Director is Mahlon R. DeLong, M.D. whose predecessors are Charles H. Markham, M.D. and John H. Menkes, M.D., both of whom are members of the Board of Directors. The Scientific Advisory Board is comprised of pre-eminent scientists in such fields as microbiology, genetics, brain circuitry, and epidemiology.
The Regional Structure was established 1993, serving as a conduit for support, awareness, and research funding, accomplished through local events and the Dystonia Awareness Week Campaigns. The regions are divided into seven regions in the United States and four regions in Canada. In each region, coordinators and representatives work with the local support groups and the leadership appointees in the areas of Awareness, Children's Advocacy, Development, Extension, Internet, Leadership, and Medical Education.
The Dystonia Foundation has developed several special programs to better serve the needs of various populations including a Parents Council, the Operation Friendship Program (for youngsters ages 8-18), the Beyond the Boundaries Program (for individuals ages 18-40), and the Junior Council. To further address various forms of dystonia, the Musicians with Dystonia, a program entity of the Dystonia Foundation, and the Paroxysmal Dystonias and Dyskinesias Network were established.
The Dystonia Foundation is dedicated to providing materials and resources to address all forms of dystonia including psychological ramifications and the coping techniques of dealing with the disorder. The Dystonia Foundation also sponsors medical and patient symposiums both regionally and internationally.